Context.— The Internet is increasingly used by consumers to seek health and medical
information, but online medical advice has not been explored systematically.

Objective.— To explore the attitude of physicians and other providers of medical
information on the Internet toward unsolicited e-mail from patients and their
reaction to a fictitious acute medical problem described in such an e-mail.

Design.— E-mail in December 1997 and January 1998 to Web sites from a fictitious
patient describing an acute dermatological problem. Follow-up questionnaire
survey to the same sites.

Setting.— World Wide Web.

Subjects.— Fifty-eight physicians and Web masters.

Main Outcome Measures.— Response rate and types of responses.

Results.— Twenty-nine (50%) responded to the fictitious patient request; 9 respondents
(31%) refused to give advice without having seen the lesion, 27 (93%) recommended
that the patient see a physician, and 17 (59%) explicitly mentioned the correct
"diagnosis" in their reply. In response to the questionnaire, 8 (28%) of the
29 respondents said that they tended not to answer any patient e-mail, 7 (24%)
said they usually reply with a standard e-mail message, and 7 (24%) said they
answer each request individually.

Conclusions.— Responses of physicians and Web masters to e-mail requests for medical
advice vary as do approaches to handling unsolicited e-mail. Standards for
physician response to unsolicited patient e-mail are needed.

THERE HAS BEEN explosive growth in recent years of the Internet and
World Wide Web as tools for seeking and communicating health and medical information,1 with increasing numbers of physicians and health care
institutions maintaining Web sites. Physicians or medical information providers
who run such sites and post e-mail addresses likely will receive unsolicited
e-mail from unknown patients asking for medical information and/or advice.
On our bilingual Web site in Germany, patients frequently cross geographic
borders to seek such information (about 75% of the unsolicited patient e-mail
messages we receive comes from abroad, mostly from the United States2). As our experience likely is not unique, this situation
raises the following 2 key questions: How do such sites react to this unsolicited
e-mail? And, should they respond at all?

The American Medical Informatics Association, Bethesda, Md, recently
published guidelines for physician-patient e-mail in the context of an established
relationship. But apart from some anecdotal reports about "clinical encounters
in cyberspace,"2-6
to our knowledge, there are no studies in the literature investigating the
question of how to handle unsolicited e-mail. Our objective in this study
was to determine how medical information providers react to unsolicited e-mail
sent by patients, to assess the quality of responses given by physicians,
to explore how unsolicited e-mail messages sent by patients are perceived
by physicians and medical Web masters (individuals who maintain Web pages),
and to determine whether there is any consensus on how best to deal with this
nearly anonymous form of medical communication.

Methods

We wished to mimic the process by which a patient with a dermatological
concern might seek medical advice on the Web and so simulated the search strategy
a patient might use to find information on his or her condition. We searched
the popular AltaVista (http://altavista.digital.com) Web index
using the query "+blisters+skin+pain+dermatology." We viewed the first 100
Web pages and selected all information providers who publish some patient
information and/or have dermatologists who could answer the e-mail. We found
the following 12 distinct sites: 4 dermatology societies or organizations,
2 commercial sites, 2 universities, 1 dermatologist in private practice, 1
clinical psychologist self-described as specializing in skin diseases, 1 publisher,
and 1 hospital. Three of the e-mail addresses extracted from these sites clearly
belonged to a physician.

We then visited all academic dermatology Web sites published in a list
compiled by Thomas Ray of the University of Iowa Hospitals and Clinics (http://tray.dermatology.uiowa.edu/AcadDept.html), except some written
in Japanese. As a result, we found 45 Web sites with suitable e-mail addresses.

This process yielded a total of 57 sites that would likely be approached
by patients with dermatological problems. In both approaches, we visited the
Web sites and looked for an e-mail address belonging to the department, to
a physician, or to the Web master.

Usually, we chose only 1 e-mail address from each site, with the exception
of 1 Japanese site from which we selected 2 e-mail addresses because of our
lack in understanding the Japanese language. If we found several addresses
on the site, we selected the e-mail address in the following order of preference:
(1) general e-mail address of the department (ie, derma@xyz); (2) the physician
responsible for the site; (3) e-mail address of the head of the department;
(4) e-mail address of any other physician in the department; (5) e-mail address
of the Web master.

Clinical Problem

Between December 1997 and January 1998, we sent an e-mail message with
the following text to the selected addresses:

Hello, I am a 55-year-old male and have a sudden skin problem.
During the last 4 days, I had a little fever and headache. There was also
a burning pain and tingling and extreme sensitivity in one area of the skin
of the chest. Since yesterday, suddenly, multiple, fluid-filled, painful,
red blisters appeared on the same skin area on the chest, on a broad streak
of reddened skin. The skin eruptions are very painful, and my wife says the
groups of blisters look a lot like chickenpox, though they are only on that
girdlelike skin area. I am on Sandimmune [cyclosporine] since I had a kidney
transplant some time ago. What is this? Is it dangerous? What is the therapy?
Do I have to see a doctor? Please reply! Thank you very much, Peter

With this description, we tried to suggest a herpes zoster infection,
caused by varicella-zoster virus reactivation due to immunosuppressive treatment
(cyclosporine). In this case, early treatment with acyclovir is essential
to prevent severe and possibly deadly complications.7-10

Because no patients were involved in our study and no subjects were
treated or put at risk, our institution does not require institution review
board notification, review, or approval of the research protocol (B. Fleckenstein,
written communication, September 10, 1998). We considered our approach to
be an appropriate assessment of quality in lieu of other means of testing
the quality of information on the Internet. After the study was completed,
we informed those who responded that the "patient" query they had received
was fictitious and was part of a research project that would report their
responses without identifying them.

Questionnaire Survey

Between 12 and 18 days after we sent the patient e-mail, we distributed
a 9-item questionnaire, using a different e-mail sender address, to the same
addresses, without disclosing that the previous e-mail had been a part of
our study. We asked how many unsolicited e-mail messages the site received
per week, what the response policy to such requests was, and what was the
respondent's personal views on the topic. We asked them to return the questionnaire
by e-mail. If we received no reply, we re-sent the questionnaire after 5 weeks
and again after 9 weeks.

Results

Demographics and Backgrounds of Our Responders.— We sent the fictitious patient e-mail to all 58 addresses; 2 bounced
back because of technical reasons. We sent the questionnaire to 53 of the
58 information providers. We excluded the 2 nonworking addresses and 3 information
providers from the United States, Canada, and Germany that actively solicit
patient e-mail since we wanted to study how unsolicited e-mail was handled
(Table 1).

Responses to the Fictitious Patient E-mail Messages.— Twenty-nine (50%) of the individuals replied; 26 (89%) of the respondents
reported that they were physicians. All but 2 of the respondents, or 93%,
urged the fictitious patient to see a physician; the 2 who did not refused
to give any advice at all. Seven (26%) of those who advised the patient to
see a physician refused to give additional advice. Of the remaining 20 respondents,
18 mentioned a diagnosis and 17 specifically mentioned herpes zoster (the
other mentioned Stevens-Johnson syndrome or toxic epidermal necrolysis as
possible diagnoses). Thirteen respondents, including the provider who did
not mention herpes zoster, expressed the diagnosis with caution. Five respondents
explained possible causes, and 9 pointed out possible complications. Finally,
5 (all of whom had mentioned the diagnosis of herpes zoster) provided specific
advice about therapy, which consisted of taking acyclovir, valacyclovir hydrochloride,
and famciclovir (Table 2 and Table 3). The usual response time was between
1 and 2 days.

Questionnaire Results.— Twenty-nine (55%) of the 53 to whom we sent questionnaires replied (Table 2 and Table 3), including 17 (32%) who also previously replied to the
fictitious patient e-mail message. We further asked how many unsolicited patient
e-mail messages these sites receive per week. Responses ranged between 0 and
50, with a mean value of 4.4 (SD, 9.47) and a median of 1 e-mail message per
week.

Except for 2 cases, we noted no obvious discordance between actual behavior
in the fictitious patient experiment and the policy stated in the questionnaire.
The questionnaire results corresponded well with the results of the experiment,
indicating that about half of physicians answer unsolicited e-mail requests.

Comment

The study found a striking lack of consensus among medical information
providers on the theoretical and practical handling of unsolicited patient
e-mail messages and their judgment of this topic. About one third of those
who replied explicitly refused to answer patient requests individually, arguing
that it would be impossible to make a diagnosis via e-mail without an examination,
as well as arguing that they lacked the resources and/or mandate to reply
to these kinds of inquiries. The remaining two thirds attempted to help individually,
5 of whom gave detailed treatment advice.

Our small sample size precludes stratifying answers by country or other
characteristics. Further, the results cannot be generalized to other specialties
or sites. Also, the response rate to the fictitious patient e-mail requests
and the information provided likely depend on the clinical contents of the
e-mail (eg, the urgency and clarity of the description). Another clinical
problem might produce different results.

There likely are many reasons why patients turn to the Internet for
medical advice, rather than asking their own physicians.2
However, our study suggests that patients approaching unknown physicians to
request e-mail advice must be aware that there is no guarantee that such information
will be accurate, timely, or appropriate.

First, only half of the physicians or Web masters responded to our fictitious
patient e-mail, even though the problem being described clearly was a medical
emergency; in chronic medical problems, which constitute the majority of unsolicited
e-mails queries,2 the response rate may be
even lower. Second, even among those who replied, the response time often
was long (up to 10 days). For a real immunosuppressed patient experiencing
herpes zoster, waiting 10 days for advice could have been fatal.

Physicians who do answer unsolicited patient e-mail requests seem to
have several reasons for being cautious. Aside from the problem that the sheer
volume of e-mail received can hardly be handled if patients overuse easy and
anonymous access to medically qualified personnel, the danger of misdiagnosing
is imminent without access to a complete patient history and physical examination.

The legal consequences of providing incorrect, incomplete, or inappropriate
advice under these circumstances are unclear. Our study suggests that making
a diagnosis via e-mail is possible in principle, as none of the respondents
offered misinformation, although 1 responding physician considered Stevens-Johnson
syndrome and toxic epidermal necrolysis as possible diagnoses, which may be
the result of the physician's personal interest in severe skin reactions.

Confidentiality and security issues also are crucial. Unencrypted e-mail
messages can be read by third parties as easily as postcards, so patients
who send out e-mail to individuals unknown to them can never be sure that
a physician really is behind the published e-mail address. Physicians could
also be misled, for example, by commercial enterprises that might use fictitious
patient e-mail as a subtle means of praising their own products or discrediting
those of a competitor.

In addition, both parties can never be sure whether e-mail actually
reached the intended recipients, as most Internet-based e-mail systems do
not provide confirmation that a message was delivered. Even if the software
returns notification of receipt, it cannot ensure that the message was actually
read and understood.11 Again, patients waiting
for answers from physicians who do not read their e-mail messages may waste
precious time.

Because the Web is a global, unregulated medium, additional cross-border
issues arise. Language problems on both sides may create misunderstandings
and patients may presume that the standards of medical training in other countries
are comparable to those of their own, which may not always be the case. Physicians
who give e-mail advice have to take into account different ethical, cultural,
or economic backgrounds of patients as well as variations in health care settings
and delivery systems, which might preclude the availability of certain therapeutic
or diagnostic procedures.12 The international
nature of the Web also poses licensing issues, raising the question of whether
a physician is allowed to counsel out-of-area patients at all.

Although guidelines recently have been proposed for clinical use of
e-mail with patients, these suggested protocols apply within an established
patient-physician relationship.11 We, therefore,
propose that additional guidelines be developed to advise physicians on how
to handle unsolicited e-mail requests from patients. The expected growth of
the Internet and its potential applications in health communication make the
need for such guidelines especially pressing. In the absence of outcome data
for patients using online medical advice, such guidelines should address clinical
and ethical issues as well as legal ramifications and concerns regarding confidentiality.

Until such guidelines are forthcoming, we suggest that medical institutions
that maintain Web sites develop standardized policies for handling the unsolicited
patient e-mail that they can expect to receive. We recommend that such policies,
at a minimum, make a provision for posting a disclaimer clearly indicating
that unsolicited patient e-mail may not be answered and is not a substitute
for obtaining medical advice in person from a health professional.